Pendulum swings in life-saving efforts

Empty chair

Michael Kubel/The Morning Call

Donna Jandras holds a photograph of her mother Loretta "Betty" Jandras at her home in Bethlehem. Next to her is the empty chair that her mother used to sit in when they spent time outside together. Jandras is disputing the mannor of care her mother was given while in Lehigh Valley Hospital,...

Donna Jandras holds a photograph of her mother Loretta "Betty" Jandras at her home in Bethlehem. Next to her is the empty chair that her mother used to sit in when they spent time outside together. Jandras is disputing the mannor of care her mother was given while in Lehigh Valley Hospital,... (Michael Kubel/The Morning Call)

A Bethlehem woman who insisted her 92-year-old mother receive life-extending medical treatments after a heart attack ran into some seemingly unlikely foes: the doctors and hospital caring for the older woman.

Donna Jandras wanted doctors at Lehigh Valley Hospital-Muhlenberg in Bethlehem to do everything possible to keep her mother, Loretta, alive, including performing cardiopulmonary resuscitation should her heart stop. Doctors saw potential risk and little benefit to resuscitating an older woman whose kidneys and other organs were failing.

The dispute illustrates a national turnabout in medical ethics, one in which doctors no longer want to employ all that medical science has to offer to keep patients alive and families find themselves fighting for their loved ones' right to live.

It's a shift in thinking that evolved in the past decade from the realization that it may be more humane to comfort than to try to cure patients near the end of life.

Backed by court orders and medical ethicists, hospitals have adopted little-known policies that declare ''doctors know best'' in deciding when to withhold or withdraw potentially life-saving treatments. As a result, a patient's final wishes may not be carried out, even when dictated in a living will or other legal document.

''Years ago, it was the physician who wouldn't stop. Now, it's the opposite: The doctor wants to give up and the family doesn't,'' said Dr. Joseph Vincent, an internist and founding member and chairman of the medical ethics committee at Lehigh Valley Hospital.

Most times, doctors and families concur about end-of-life treatments such as resuscitation, ventilators and feeding tubes. But when they don't, relations can get nasty. Relatives who persist in their protest can find themselves confronted by security guards, out-of-pocket medical bills and court petitions for guardianship.

The turnabout has taken place over the past 10 years. Patients began losing trust in their physicians when health maintenance organizations paid doctors to restrict access to expensive specialists and tests. Also, studies proved the most advanced technology and medicines cannot always keep patients alive but can cause them harm. The example cited most often is the risk of breaking ribs or causing nerve damage when performing chest compressions during CPR.

LVH's policy, in part, states:

''If all of these steps are taken and the family remains unconvinced, neither the doctor nor the hospital are required to provide care that is not medically indicated, and the family may seek a substitute physican (if one can be found) and another hospital (if available). The Lehigh Valley Hospital will assist the family in their efforts to find those substitutes.''

Stephen E. Lammers, a professor of religious studies at Lafayette College, said he helped Vincent draft LVH's guidelines as ''a way of signaling to everyone that the insistence upon continued treatment went beyond accepted medical practice.''

Heart attack was first problem

In the past year, hundreds of families have reached agreements with LVH's medical staff, Vincent said. Three cases went unresolved.

Loretta Jandras' was one.

A doctor's daughter who had no family physician and lived with daughter Donna, Loretta Jandras entered LVH-Muhlenberg in Bethlehem on March 3 because of a heart attack.

According to her daughter, emergency room physicians initially expected the petite older woman to recover, then discovered an abscess, a major infection in her gastrointestinal tract.

Early on, in discussions about testing and treatment of the infection, the family and attending physician got off on the wrong foot.

Donna Jandras overheard a nurse say her mother had a do-not-resuscitate order. The daughter demanded the ''DNR'' be lifted. She said her mother was a devout Catholic and would want everything possible done to keep her alive.

''To her, every day was a precious gift,'' Donna Jandras said. ''She believed that you don't give up because you suffer. That's part of life.''

Dr. Nainesh Patel, Loretta's attending physician, told the family that his patient voiced the opposite wish. She said ''Let the Lord take me'' or something similar to the doctor during a lucid moment when family wasn't present, Donna Jandras said.

Relations between the medical staff and family plummeted. The ethics committee convened a conference call with Donna Jandras and her out-of-state siblings.

Despite the agreement among doctors, nurses, technicians, social workers and a hospital chaplain that aggressive treatment for Loretta would be futile, the Jandras family remained steadfast in their desire for her to receive treatment that could keep her alive. They considered the meeting a strong-arm tactic in response to their allegations the staff caused Loretta Jandras' deteriorating condition.

Near the end of her mother's 10-week stay at LVH-Muhlenberg, Donna Jandras argued with doctors and nurses to continue antibiotics and heart rate medicine. Whenever the medicines were stopped, she said, her mother's heart would race, her temperature would rise.

Patel, the doctor in charge, declined to be interviewed.

Vincent, who was not directly involved in Loretta Jandras' care but was familiar with the complaints, said the family ''misinterpreted good medical therapy,'' including orders to start and stop some medicines.

''Illness begets illness,'' Vincent added, suggesting that the patient was quite ill and when one major organ system fails, others often follow.

To resolve matters, Jandras hired a lawyer and had her mother transferred to Sacred Heart Hospital in Allentown. She died the next morning.

''I had always given my word to her to be there for her,'' Donna Jandras said days after her mother's funeral. ''I believe strongly that if your word is not good when times get tough, it's not good at all.''

Under LVH's guidelines, when the family and medical staff cannot reach consensus, one of four things can happen: The medical staff concedes to the family's wishes and continues to treat aggressively; care is transferred to another doctor or medical facility, as in the Jandras case; a local judge or court is consulted; or the doctor refuses to treat the patient.

Vincent said the last option to refuse treatment ''takes courage'' on the part of the physician because he or she will most likely be sued. No doctor at LVH has refused to treat a patient, he said, but some patients have been transferred to other facilities.

Before Loretta was transferred, doctors eventually removed the do-not-resuscitate order from her chart and restarted her medicines, but the battle scars remained.

Donna Jandras tried to find other doctors who would care for her mother at LVH-Muhlenberg. One doctor said it would be a conflict of interest because he is employed by the hospital network.

Donna Jandras called or e-mailed more than 30 attorneys locally and regionally, including ones who specialize in elder law. One replied.

Allentown lawyer Carol Marciano agreed to represent the family to improve communications between them and the medical staff and to find Loretta Jandras another physician to proceed with the family's wishes.

''It's a heart-breaking case,'' Marciano said. ''All of us are getting older and have older parents to worry about. It raises the issue of who ultimately decides, and it's scary because it's not the family.''

When LVH told Marciano they could not find another doctor on staff willing to take her case, the lawyer went to the Catholic Diocese of Allentown, whose principles include preservation of life. A monsignor suggested she call the president of Sacred Heart Hospital, a city hospital that is not run by the diocese but influenced by its philosophies. The hospital's chief counsel, Stephen Lanshe, gave Marciano the name of a doctor on staff who would admit Loretta and oversee her care.

It took several days to arrange, but on the evening of May 14, an ambulance transported Loretta Jandras to Sacred Heart. Her daughter doesn't know why she died the next day. An autopsy performed at St. Luke's Hospital in Fountain Hill revealed ''no obvious cause'' of death, she said.

Throughout the ordeal, the family complained to patient representatives, the state Department of Health and the attorney general's office. She even wrote to a representative of the Vatican in Rome.

In an April letter to LVH, Donna Jandras' sister Gayle wrote, ''The doctors have been predicting imminent death for my dear mother since she arrived several weeks ago. My mother continues to fight because she wants to live. Each of us have given our word to uphold her beliefs and protect her from others with different beliefs. Trying to make the family change their minds toward accepting passive murder is futile.''

Marciano said the problem in her client's case was that there was no ''captain of the ship'' directing Loretta Jandras' care. ''Donna was getting conflicting information from all the medical specialties that affected communication.''

Hospital policies vary

Most hospitals have policies to deal with patients' wishes for continuing or withdrawing treatment but might not call them ''futile care'' policies. Some carry the titles ''end-of-life,'' ''self-determination,'' or ''advance directives.''

The American Medical Association recommended all medical centers, large and small, adopt policies on ''medical futility'' in June 1997. Yet, seven years later, because definitions of futile care still vary, spokesman R.J. Mills said, ''universal consensus on futile care is unlikely to be achieved.''

Unless a conflict occurs, patients and their families may not know the policy exists at the hospitals they use. LVH did not announce the policy six years ago, when its guidelines were adopted. St. Luke's Hospital in Fountain Hill and Easton Hospital in Wilson have similar policies but would not release copies.

Pocono Medical Center in East Stroudsburg has a ''consent for treatment'' policy that encourages primary care physicians and admissions staffers to ask patients to sign papers indicating their treatment preferences before it becomes an issue.

Donna Jandras didn't know about hospital futile care policies until she heard an LVH official use the word ''futile'' and searched the Internet.

Neither did Phil Confer Jr. of Allentown, who had a similar dispute with LVH over his father's care at the Salisbury Township hospital. Last month, LVH prohibited him from visiting his father on the day he was to be transferred to another hospital, citing allegations Confer had threatened a staffer on a previous occasion. The hospital also had called security in the past, Confer said, when he videotaped his father in bed and used a phone in the room to get insurance clearance for the transfer.

A Massachusetts ruling in April 1995, believed to be the first to test such policies, found that the hospital and two doctors were not guilty of neglect or imposing emotional distress by issuing a do-not-resuscitate order for an elderly, comatose woman. As in the Jandras case, the woman's daughter had objected to the order, requesting everything medically possible be done. Similar case law has upheld the withdrawal of life support from premature infants born with little chance of survival.

In another testament to the shift in medical ethics, increasing numbers of hospitals have started offering palliative, or comfort, care, even in intensive care units, according to AHA spokesman Matthew Fenwick. In 2000, the first year its membership was polled, 580 hospitals, or 13.8 percent, reported offering services that comfort, not cure. Two years later, in 2002, the number had climbed to 951, or 19.5 percent.

Arthur Caplan, director of the Center for BioEthics at the University of Pennsylvania, said doctors compound the problem if they give families too many choices.

''It's dangerous to give the family the last word since guilt and desire to do everything for mom or pop makes it emotionally impossible to stop any treatment,'' he said. ''Doctors differ on their views but at least they can step back a bit and be guided by experience and the latest published data on efficacy.''

Caplan added that the pope's recent edict that life itself is more important than the quality of life is inconsistent with American practice.

Sacred Heart legal counsel Lanshe said he believes that miscommunication is the root of most disputes. To avoid that at Sacred Heart, he organized a meeting between the Jandras family, their lawyer and Sacred Heart staffers before the elderly woman was transferred.

His biggest fear: The family would assume a different outcome.

''I didn't want her to think her mother would be cured,'' Lanshe said.

Sacred Heart could still ask him to approach the court if the medical staff felt the family was not representing the best wishes of their loved one, he said.

''There's nothing wrong with wanting aggressive care for somebody but you can make someone's last days worse by doing too many things,'' Lanshe said.

Resolving differences

Despite the shift in medical ethics, many relatives resolve their differences with doctors at LVH through the hospital ethics committee.

One satisfied consumer, Erica Robbins of West Chester, said the committee eased tension between a doctor and the family regarding her elderly aunt's need for a breathing machine and related surgery.

The specialist initially had told Robbins he would not recommend putting 91-year-old Olga Katz of Bethlehem on a ventilator because she had congestive heart failure and probably would not survive her hospital stay.

''I felt insulted that someone who had just met her 20 minutes earlier would make a decision about what she wanted,'' Robbins said.

At the same time, she didn't want to make the decision on her own, so Robbins and her family consulted two rabbis and researched Jewish law in Israel. The law said ventilate.

Robbins lauded the ethics committee for allowing her, her husband and sister-in-law to speak about Katz as the vibrant person and Holocaust survivor that she was. Katz eventually left the hospital, Robbins said, and lived another six months.

Still, Vincent anticipates more conflicts until society comes to grips with futile care. People are living longer, increasing their odds of getting an illness or injury that renders them unconscious or unable to dictate their wishes. Plus, more money is spent on medical care at the end of someone's life than at other times in their lives.

''The danger is that because of the rising cost of health care, someone like the government or insurers will dictate that if you have X, Y or Z you will not get the care,'' Vincent said. ''If too many push to be kept alive, then that's going to happen. The culture looks at the bottom line.''

Although 90 percent of people surveyed say they would not want to be kept alive in a vegetative state, less than a quarter make it clear in advance when they would want doctors to give up.

But, ''living wills are not a panacea,'' he said, because they cannot spell out every potential scenario. ''They are important but perhaps more important is to discuss your wishes with your family, physicians, minister and lawyer.''

Donna Jandras did a lot of talking to make her wishes for her mother known. But, she said, doctors and hospitals seem more willing to accept a family's wishes when they don't want aggressive treatment than when they do.

''You have the right to kill but not the right to save,'' she said.

Now Jandras hopes to bring awareness of the policies to other families struggling with treatment decisions.